In July 2009, our beautiful son Adam was diagnosed with high-risk neuroblastoma, an aggressive children's cancer. Despite four years of treatment in the UK, Germany, and America, Adam sadly passed away on 11th July 2013 at home with his family. Visit Adam's Appeal at http://adamsappeal.org.

Wednesday, 8 December 2010

They’re like London buses …

Now I’m betting there’s at least one person out there in this virtual world in which we communicate that is wondering why I didn’t write anything for two weeks and now I’ve posted three times in as many days. The reason is very simple and has very little to do with cancer. I’ve been playing around with different external blog editors to see which I find easiest to use, it’s something I should have done a long time ago!

So that this isn’t an entirely bogus update, one artificially crafted for technical pursuits rather to inform my readership (steady!) of Adam’s progress, I do actually have something meaningful to tell you as well.

The current plan (subject to change on past experience) is that we will be taking Adam back up to UCH in London for another round of 131I-MIBG internal radiation therapy on Tuesday 4th January. Which, of course, means that Adam will be at home over Christmas without any restrictions and (as long as he remains well) able to participate in the festivities. We don’t yet know if there are plans to give him any further holding chemo between now and then, that is something I need to discuss with the hospital this week. The one infusion of Cyclophosphamide is the only stuff he’s had since August and his previous MIBG therapy was at the end of September. By the time he has the next one it’ll have been 5 weeks since the chemo, and more than 3 months since MIBG.

After MIBG the current plan (subject to change on past experience) is to go into high-dose chemotherapy with stem cell transplant within the month i.e. sometime in January. That will be a 4-8 weeks inpatient stay at The Royal Marsden. With yet another MIBG and radiotherapy to follow the likely date for immunotherapy looks to be around April now. But it’s all subject to change. Always.

At the moment the only place Adam can receive immunotherapy is in Greifswald in the former East Germany. This is ch14.18 antibody given with the cytokine IL2 (to rev up the immune system) as a continuous infusion. It’s not the same as the U.S. treatment that has proven efficacy and that we initially started to fundraise for (ch14.18 + IL2 + GM-CSF). Adam’s slow progress has meant he no longer qualifies for the U.S. trial. I am going to over-simplify the reason why, but most fundamentally it’s because if they gave the treatment to every child they would run out of supplies faster than a new batch could be manufactured. So instead they hold it back and give it just to children who meet the entry criteria of the original clinical trial on which the efficacy was proven. It might (or might not) work just as well for Adam, but it’s not been proved yet. Even children in the United States don’t get it at the moment if they fall into the same category as Adam…

The current European (SIOPEN) immunotherapy trial that was hastily introduced at the end of last year (and of which the UK is a participant) has the same entry criteria as America – specifically it’s only open to children who reach high-dose within 9 months of diagnosis – which is why Adam doesn’t qualify for any treatment here. I can tell you that as far as I’ve been told that number has absolutely no medical significance. It’s purely there so that the sample set have a certain homogeneous nature in order to preserve the statistical significance of the trial outcomes. The UK trial also randomizes children to either ch14.18 + IL2 of ch14.18 alone. This has been a significant bone of contention with informed parents, as a previous study undertaken in Germany some years ago concluded that ch14.18 given alone did not result in improved outcomes. However, years later after the study had been closed researchers went back and looked at the data retrospectively and then decided the initial findings were flawed and there was a benefit! So part of the current EU/UK trial is going back over old ground inadequately covered by the Germans years ago. Now I’m quite certain I’ve over-simplified – I’m a humble layperson not a doctor or researcher; but whichever way you look at it things have turned out quite unsatisfactorily. I refuse to believe it’s actually the case, but sometimes it does feel like these children are first and foremost viewed as trial subjects rather than sons and daughters, brothers and sisters. The outcomes of these clinical trials might benefit the next generation of children diagnosed with Neuroblastoma, but what parent would want that to be at the expense of their own child? In the modern era of information sharing, internet and email I foresee more and more difficult questions being asked of doctors, researchers and policy makers alike.

Anyway, back to the (current) German trial. It is hoped that it will be at least as effective as the U.S. treatment, but with fewer and less sever side-effects. However, it’s still bad. Very bad. Pain controlled with intravenous morphine, hives, capillary leak syndrome, fluid retention, renal failure. And that’s by no means an exhaustive list. The cost is in the region of £70,000 which is considerably less than the U.S., but that’s the part I care about least to be honest.

On the horizon there should be (at least) two new trials opening up in the coming months that might offer us different immunotherapy options for Adam. It all depends on the exact timings, both of the trials opening and of Adam’s treatment. In the first half of 2011 a second European trial is planned in which the UK will be participating. Other than the fact it will be open to all children, including those excluded from the initial trial I have no further information at the moment. At the same time a new trial in US is hopefully going to be opening for enrolment which administers the ch14.18 antibody with a different immune system booster that’s it’s believed will both enhance the effectiveness of the antibody treatment and simultaneously reduce toxicity.

There is so much about having a child with Neuroblastoma that I could not have envisaged for one second when Adam was diagnosed. In the early days it was all too much and we just ‘went with the flow’ and that’s really how I’d always perceived things to be when somebody got seriously ill. Somebody (and you know who you are) told me very early on that they had read Lance Amstrong’s book and when he was diagnosed with cancer he made it his business to find out as much as he possibly could about his disease, and the influence that he could have over his own destiny. In some ways I wish I’d started to get educated a lot sooner than I did, but I guess I just wasn’t ready at the time. Don’t get me wrong there are still huge gaps in my knowledge but at least I know who to speak to, and for the most part what to ask.

Time to sign-off. I need to find out what is happening (if anything) with Adam between now and MIBG therapy in January, and then try to learn more about the new antibody trials in UK and U.S. Oh and I need to do some shopping. Alison will be quietly turning 40 years of age next Monday. I must remember to get her a card. One of the (many) challenges of having a child like Adam is to try and stop the rest of your life passing you by… because if you’re not careful that’s precisely what starts to happen.

And by the way, Windows Live Writer was the external blog editor of choice for this post; for any of you technically minded people that might be vaguely interested. Despite instinctively hating all things Microsoft it’s actually quite good. I’ll probably use it again… in a couple of weeks time.